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Have you ever heard of Charcot-Marie-Tooth disease (CMT)? For a long time, I hadn’t either, which is surprising given that it’s one of the most frequently inherited neurological disorders. According to the Mayo Clinic, CMT encompasses a group of inherited disorders that lead to nerve damage, primarily affecting the arms and legs. Like many invisible illnesses, awareness about the daily realities of living with CMT remains low.
So, how did I learn about CMT? About three years ago, I was browsing YouTube for inspiration on yet another Weight Watchers journey. That’s when I stumbled upon the channel of a remarkable individual named Sarah, who shares her journey through life with CMT. Her openness and honesty about her experiences have been incredibly enlightening.
In recognition of September as CMT Awareness Month, Sarah recently discussed her unique CMT journey in an interview that is truly inspiring. She recounts how a misdiagnosis turned out to be a blessing, leading her to discover a condition that was far less daunting than initially thought. Moreover, she advocates for herself and others with CMT, encouraging them to embrace acceptance and find ways to adapt to their circumstances.
Understanding CMT
Sarah’s experience with CMT is quite different from many others. Initially misdiagnosed with Spinal Muscular Atrophy (SMA) at birth, she faced a challenging start. In the 1980s, knowledge about CMT was limited, and SMA was often viewed as a terminal condition for infants. However, her father’s visit to a podiatrist led to the discovery of CMT, as her symptoms matched the familial traits he described.
While she didn’t have SMA, Sarah faced her own set of challenges due to the infant onset of CMT, including never crawling and learning to walk only at the age of three. Yet, she has found a silver lining in her situation. “Having to learn to walk with aids like a walker or braces felt like an opportunity,” she explains. Many individuals with CMT begin to experience significant limitations in their mid-30s, but Sarah has chosen to stay ahead of the game.
Despite having limited function in her arms, Sarah has adapted her workouts and currently lifts weights. She participates in Body Pump and Lift 4 by Beach Body, demonstrating incredible resilience. “I started with 1lb weights, and now I’ve made tremendous progress. It’s an amazing feeling!” she shares.
What to Know About CMT
Sarah emphasizes the importance of adaptation in her daily life. Simple tasks, like opening jars or applying pressure to a sponge, can be challenging. “I find creative ways to manage my tasks, and my family has only recently realized how differently I do things,” she reflects.
Living with CMT, like other chronic conditions, often goes unnoticed by those who don’t experience it daily. When asked what she wanted people to understand about CMT, Sarah emphasized, “For those with CMT or similar conditions, acceptance opens the door to adaptation. Just because you have CMT doesn’t mean you can’t lead a fulfilling life. It’s crucial to respect your body, as even small tasks can be exhausting.”
Sarah is a shining example of thriving with CMT. She runs a YouTube channel, offers wellness coaching, and fosters a supportive community focused on healthy living. Awareness doesn’t have to wait for September; it’s essential to educate ourselves and engage in conversations about CMT and other often-overlooked conditions.
For more insights, check out this blog post on our site. Also, be sure to visit Make a Mom for their expertise on artificial insemination kits, which can be a valuable resource for those looking to conceive. Additionally, ACOG provides excellent information on treating infertility, a helpful read for those navigating these challenges.
Summary:
Charcot-Marie-Tooth disease (CMT) is a prevalent inherited neurological disorder often misdiagnosed. Individuals like Sarah demonstrate resilience and adaptability, showcasing that life with CMT can still be fulfilling. Awareness is key to understanding and supporting those affected by chronic conditions.
Keyphrase: Charcot-Marie-Tooth disease
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